Anyone Experienced Angioedema W/ Gluten Sensitivity?

[firegazing]

I have been suspecting for about 18 months that I might have celiac. My son had extreme fussiness and learning delays which were corrected after putting him on a gluten-free diet. This caused me to examine my family tree, half of which is comprised of people who have colon cancer, intestinal problems, IBS, etc. Not one of these people has been tested for celiac, or even had a doctor suggest it. I have intestinal/stomach symptoms, fatigue, "brain fog", and acne, which are all relieved (or at least improved) by avoiding gluten. I am 25 years old and female.

Lately I have been having some more dramatic symptoms. These include:

-Episodes of moderate-severe angioedema of hands, feet, lips, eyelids, and possibly airway--sometimes red & itchy, sometimes not

-Diarrhea and/or nausea sometimes happens beforehand or along with the angioedema

-Itching (whole body, near constant)

-Shooting nerve pains, paresthesias, & other symptoms of peripheral neuropathy, mostly in areas where swelling happened, but also in other areas

-Temporary, brief impairment of movement in legs & hands

-Hive-like red patches or small stripes (this is the least frequent symptom)

-Sweating profusely some nights without any obvious cause (in an air-conditioned room)

-First swellings accompanied by a widespread rash, (not hives--looked like erythema marginatum)

-Knobby, itchy, bumps like big bug bites before first swellings--these were also not hives

-Stumbling, confusion, forgetfulness, clumsiness, usually while experiencing other symptoms

-Off and on low grade fever (99-102)

-Rising eosinophilia (rose from 5% to 16%), lymphocyte count decreasing (went from 30% to 19%) from the 1st week of symptoms to the 2nd week... no idea what they are like now

These things started immediately after I returned to "normal" eating, about 6 weeks ago, after a month of eating gluten-free. Has anybody heard of these sorts of symptoms being connected with celiac? They do not appear to be reflecting any traditional allergies, as they can happen at any time, in any place, in any temperature, regardless of what/whether I've eaten in the past few hours, and they do not respond to antihistimines.

I didn't recall the connection between ingestion of gluten and the onset of this "illness" until today. I have been to several different doctors, all of whom disagreed with each other and a couple of whom have been incredibly rude (one even insisted that all my symptoms are due to pregnancy, in spite of the fact that I was not pregnant yet when they began). It's true when they say that you don't want to be the patient who is difficult to diagnose!

My insurance recently changed and I am seeing my new PCP soon. What blood tests should I request? Should I ask for a referral to a gastroenterologist? I want to come prepared, so that I am not brushed off (again) as having a "mystery virus" or allergy, when I think it's pretty clear that something else is going on.

Thank you!

[happygirl]

When you see your new PCP, discuss your concerns about Celiac.

Print out this list of tests you would like run for Celiac. It comes from Columbia University. Open Original Shared Link

"Serologic panel

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

The reason for the use of the panel to detect celiac disease is several fold. They include selective IgA deficiency (SIgA deficiency), lack of concordance of endomysial antibody and tTG, and the occurrence of seronegative celiac disease."

Another good resource is: Open Original Shared Link

[firegazing]

Thank you. That's very helpful. I'm glad to be going in to this next appointment armed with specific requests.

[firegazing]

I saw my new doctor yesterday. He is a very nice man (thankfully!) and he spent a long time with me, trying to puzzle out my symptoms. He wanted to order the celiac panel, which made me very relieved. I hope to get the results soon.

[Bellamia]

Read your syptoms and had a few questions. I have had allergy testing(after having over 200 positive when I was a child the test now only showed grasses), auto immune testing and lots of head scrathing by my doctor, to no avail. (25 year old daughter is gluten and dairy intolerent) However I have some of your syptoms and have been off grains for about a month. Up until that time I had severe swelling of my eyes, lips, face, tounge, lips. It all occurs only when I am sleeping and once I am awake they start to go down, however some of the facial swelling can last a few days.

I also have very itchy, red, red with rash and swollen feet, hands, wrists. They also get what looks like hives, with no blisters. I can relieve the itching with lots of witch hazel. I have had a few of these syptoms since I went off grains, and can say what I had that was different that day.

I also get red spots on my knees, elbows, shoulders that itch. I get very large red, swollen, hot spots on my buttocks (recently realized that I have had these syptoms for over 13 years). Some of these spots now bruise after the red goes away. Last week I had some Haribo candy (made in Turkey) and began to swell right away, and now those spots are bruised.

I have had 3 other people tell me that they had the same syptoms and are all gluten intolerent. A few months ago I went on a complete allergin free diet and things calmed down, but then I got lazy and went back to my old ways and things got worse again.

I have also been on homeopathy, but even that does not seem to calm things down like a grain free diet.

Let me know if your doctor had any answers. I am doctored out!

[dksart]

How old are you? If you don't mind my asking. Several of your symptoms remind me of myself a few years back when I began experiencing pre-mature peri-menopause at age 33. Celiac can do some crazy things to our bodies and all of the things you listed could be related.

Thankfully, I no longer experience the horrible night sweats. I used to go to bed with three extra t-shirts, folded on my night stand and wake up with a pile of them, soaked through on the floor. (The stumbling and brain-fog etc., although not as bad now, are still around.)

The Gluten-free diet and extra strength Estroven helped that!

[Bellamia]

Hi again,

Were you asking the original poster how old they were or me (Bellamia)?

If it was me, I'm 52 and menopause happened 7-8 years ago. Never had problems, did not take any meds. Had night sweats back then, but nothing major now.

Hopefully Firegazing will give us an update on her testing and new doctor.